Students with Disabilities in the Field of Medicine (by Farzana Ali)

Farzana Ali (left) and Daniel W. Sheehan, Associate Dean for Medical Curriculum at the Jacobs School of Medicine and Biomedical Sciences.

How are you going to do the long hours of clinical rotation in this condition?

As a premedical student, the strong emotion invoked by that question left me speechless. Especially since it was posed by the Associate Dean of medical education from my beloved undergraduate institution, Stony Brook University, a community where I developed my values of inclusion and service for the betterment of humanity. I just wished he could see how much effort went into the long hours of research and volunteer work I did in that community, alongside my hectic premedical curriculum. Then he would realize that dedication and hard work can make a student achieve their goals, regardless of their disability. But he was so preoccupied with my wheelchair-bound paralyzed appearance, that my years of academic and extracurricular accomplishments were reduced to meager scribbles on paper.

The question was an explicit expression of the bias against students with disabilities held by an individual with the highest authority to decide who can pursue medical education in his institution. But even more unfortunate are the cases where such bias is held implicitly, barring a dedicated student from pursuing their lifelong dream. Despite the enactment of several acts to ensure equal access to education in the United States, many students still face discrimination due to the ambiguity of those acts and the reluctance of authorities to provide necessary accommodation. A recent article published in the Journal of the Association of American Medical Colleges addresses the lack of support from most medical schools in providing accommodation for students with disabilities, despite the evidence that physicians with disabilities are more empathetic towards patients, and are actually preferred by patients.

A 1987 study reported only 0.25% of US medical students had disabilities, and still today, less than 1% of medical students have any disability, compared to 20% of our general population. Even though individuals with disabilities constitute the largest minority group in the US, their representation in the medical field is well below the percentage of other minority groups. One major component of medical admission that may work against students with disabilities is the technical standards (TS) set by medical schools in the US and Canada. The medical schools need to delineate these standards before receiving accreditation from the Liaison Committee onMedical Education (LCME), a voluntary organization that ensures the quality of medical education based on established standards. Majority of US medical schools state in their TS the need for full participation of the student in every aspect of medical training with or without accommodation. Even though a third of US medical schools explicitly express their openness to the provision of reasonable accommodations to otherwise qualified students with disabilities, more than half of the medical schools remain vague in their statements regarding reasonable accommodations. Moreover, it is up to the institution to decide what type of accommodation is considered “reasonable”.

Schools are required to provide reasonable accommodation, and are prohibited to discriminate against students with disabilities, in accordance with the Rehabilitation Act of 1973 and its Section 504. The nondiscrimination concepts of Section 504 were further reinforced by the passage of the Americans with Disabilities Act in 1990, and its amendment in 2008. Yet, the variation in applicability of these acts depending on individual’s condition adds more ambiguity to the notion of reasonable accommodation. This contributes to the uncertainty of a student’s eligibility for being considered for medical education in a particular institution. As a result, applicants with disabilities to medical programs have to rely on the knowledge and open-mindedness of a medical school regarding their disability. Even after the admission of a medical student with disability, the Institution needs to implement a team-oriented approach including the student and knowledgeable individuals to ensure proper training that meets established standards.

Despite these stated complications, there have been many medical students in the US who have not only completed their medical education, but also flourished in their practice. Dr. Shane VerVoort was the first quadriplegic to enter medical school in 1979, who currently practices in physical medicine and rehabilitation, a specialty dedicated to patients with conditions similar to his own. In 1992, James Post was rejected by all the medical schools he applied to, because of his disability, despite his outstanding academic performance. But his perseverance led to his acceptance into the Albert Einstein College of medicine, where he graduated in the top 10% of the class, and is now practicing as a kidney specialist. Meghan Wilson is one of the recent success stories for medical students with disabilities, even though she had to initially struggle to get into a medical program due to her disability. She became quadriplegic from a skiing accident at the age of 17, but later went on to finish her M.D./ Ph.D. degree, and is currently doing residency in the Department of Physical Medicine and Rehabilitation at the University of California, Irvine School of Medicine.

The presence of students with disabilities adds a unique dimension to diversity in medical education by enlightening students without disabilities about disability issues through personal interaction with their fellow students with disabilities, as indicated by the lead physician author of the aforementioned article. The proactive measures taken by the Association of American Medical Colleges have been useful for educating faculty and administrative staff members of medical colleges in the US about reasonable accommodations for medical students, and broadening their viewpoint on accepting students with disabilities. The LCME can play a vital role in this process by reinforcing ADA compliance in TS evaluation of medical schools in the US and Canada. Such efforts will not only improve diversity in the medical field, but also enable patients to receive care from physicians who can connect through personal experience and unique insights.

Farzana Z Ali

Class of 2020

Jacobs School of Medicine and Biomedical Sciences

Dr. Skinner’s Childhood Home for Sale (by James Boles, Ed.D.)

A large 1828 house on the Prattsburg, NY Town Square Park will be soon listed for sale. This house, known locally as the ‘Blood House’, was named for the Fred and Ada Blood family who lived there in the early 1900s. Recent interest in the house stems from its first owners, the Erastus Skinner family. The Skinner family had the house built in 1828 by Asa Hopkins. A famous member of the family, Dr. Platt H. Skinner, lived in the house as a child from 1828 to the 1840s. Dr. Skinner was a graduate of Franklin Academy and Oberlin College in Ohio and trained as a dentist. He and his wife Jerusha (Hills) opened three schools for disabled African-American children during a racially troubled time in America’s history (1858 – 1866). The Skinner family briefly lived on Mechanic St., before building this house.

Skinner House on Mchanic St. 1824-1828, J. Boles 2016

Assisted by Prattsburg, NY Town Historian Lenora Applebee, the two Skinner homes were discovered in a trip to the Historian’s Office in May. With help from Historian Applebee, contact was made possible with the homeowner, Connie Dickerson. On Friday June 3rd, Lenora and I dropped in on Connie as she started to clean out the historic home and she graciously invited us in for a tour.

Although re-modeled many times over its 188 years, the house has many beautiful features such as the wide plank floors and woodwork.

Staircase in Skinner House-J.Boles 2016

As the Museum of disABILITY History in Buffalo prepares for an updated book about Dr. Platt H. Skinner, we thank the Prattsburg Historical Society, Director Lenora Applebee and the homeowner, Connie Dickerson for showing us his boyhood home.

Museum Publication

Dr. BW Dean, “The Sweat Doctor”

Alternative Medicine in Lockport New York

While researching early human service agencies in Niagara County New York, I came across a number of commercial ventures that were often based upon an alternative view of health care that differed from the traditional care available during 1830s – 1920s. This resulted in health products ranging from medicinal mineral waters, medicines, and foods that were produced locally and were sold widely. At this time, there were also many doctors with unique treatments who practiced in the Lockport area.

With good marketing and common wisdom, these enterprises used a variety of colorful remedies, often harmless, to help their customers. Mainstream medicine at the time could be far more dangerous. The next series of columns will be focused on Lockport’s alternative medicine.

Benjamin W. Dean was born in 1794 at Philipsburg Manor, Westchester County, NY. For his medical training, Dr. Dean studied under a traditional physician. In 1825 he is listed as the physician for Macedon Center, New York, a canal town just east of Rochester. In 1841, Dr. Dean, his wife Sophia, and son Herman, were living in Lockport, NY where he practiced this “sweat doctor” medicine.

The new method Dr. Dean was using in Lockport was invented by Dr. Thompson of Ohio. It was a system and book that sold for $20.00 and included a stock of available medicines that could be purchased by the practitioner and recipes to make homemade cures, extracts from Native American vegetables were favored. This was a non-traditional medicine that was advertised as an alternative to medicine practiced at the time. Dr. Thompson believed that disease was caused by a clogged system. This would be helped by purging and sweating, doctors that used this method were sometimes called “Sweat Doctors”.

Museum of disABILITY History

Local flyer from Dr. Dean with a summary of the Thompsonian Botanic Medicine System

Shortly after publishing his flyer, Dr. Dean passed away, September 10, 1841, at the age of 47. Dr. Benjamin W. Dean is buried at Cold Spring Cemetery, town of Lockport in the Price family section. Dr. Dean’s sister married into the Price family.

Jim Boles 2015

Dr. Dean has two headstones. The worn original stone was replaced by a new stone but the original one still remains. Cold Spring Cemetery, Lockport New York

I want to thank the officials at the Cold Springs Cemetery, Lockport New York for their assistance in locating the grave.

Jim Boles, Ed.D. is a senior researcher with the Museum of disABILITY History, 3826 Main Street , Amherst NY. The museum is dedicated to preserving the history of people with disabilities. James Boles can be contacted by calling the museum or via email: Jboles@people-inc.org

Our next museum event is a film screening of Capturing Grace by David Iverson, featuring dance studio ‘Danceability’, which focuses on the treatment of Parkinson’s disease. The screening is scheduled for Saturday, March 12, 2016 with 3PM and 7PM showings – reception at 5PM. Please RSVP for ticket reservations by calling 716-629-3626. This is a FREE event.

I am writing to report back on advocacy activities I have taken part in during the 2015 Conference of the National Council on Independent Living (NCIL), the 25th anniversary of the Americans with Disabilities Act (ADA), as well as other activities in Washington, DC.

Alec Frazier with Yoshiko Dart

I met with a number of really wonderful disability rights leaders while in Washington, DC. Yoshiko Dart, the Mother of the Americans with Disabilities Act remembered me quite fondly once I jogged her memory. We had an awesome time discussing advocacy, and I gave her a copy of my book. That afternoon, our region held a meeting to discuss advocacy and lobbying during the legislative day that was forthcoming. Clifton Perez, our region’s coordinator, was made aware that I was representing Western New York Independent Living (WNYIL), as well as my firm, Autistic Reality, at the conference. That night, we had a wonderful banquet to celebrate the 25th anniversary of the Americans with Disabilities Act. Practically every disability rights leader in the nation was at that banquet, and I met some wonderful folks. I also got to thank Joyce Bender for paying for my admission to the banquet.

Alec Frazier with Joyce Bender

The next day, Tuesday, we held our March to Capitol Hill. During the March, I walked with the rest of the New York delegation. At one point, the director of the Utica network of independent living centers, RCIL, offered me a paid speaking engagement, which would also include transportation, lodging, and per diem meals. This will be the second independent living network that has engaged the services of my firm, Autistic Reality, and the third speaking engagement I have had for a network of independent living centers. At the rally, a number of powerful, influential politicians spoke to us about the need to support the disability cause. They included Steny Hoyer, Tammy Duckworth, Bernie Sanders, and many others. Many advocates were also a part of that rally, such as Bruce Darling and other members of ADAPT. The Cortland, New York independent living center, Access to Independence, sent a whole bus full of people to advocate in DC.

Alec Frazier of Autistic Reality and some of the New York NCIL delegation with Congressman Paul D. Tonko and Congresswoman Yvette Clarke at the rally at the 2015 NCIL Conference.

As for the lobbying, on Capitol Hill, our main agenda was to get the Community Integration Act (CIA) passed. This act would create a new title for the Americans with Disabilities Act which would be aimed completely at getting people out of institutionalized living settings. We were aware of the unfortunate naming choice, but it was better than some other name choices such as the DEA! The legislators I spoke to included staffers for all three of the Congressman representing areas covered by Western New York Independent Living, as well as staffers New York’s two senators. Just as a matter of record, the Congressmen are Chris Collins, Tom Reed, and Brian Higgins. The Senators are Charles Schumer and Kristin Gillibrand. I went to see the disability policy advisor for Congressman Brian Higgins, Leslie Brady, on my own. I pushed for the CIA to be passed. It should be noted that the Congressman’s office was not aware of the Community Integration Act, but they said they given his record on other similar measures, he will most likely support it. He is also very much in favor of improving Buffalo’s infrastructure, as well as employment opportunities, healthcare provision, housing opportunities, and more. In addition, I brought up the fact that many of Buffalo’s new careers and publicity opportunities are in the arts, such as filmmaking, comic book art, museums, and the promotion of such. All but one of the remaining congress-people and senators agreed completely with the CIA. One of the more rural congressmen proved harder to convince. Senator Schumer in particular agreed to promote the CIA heavily. Congresswoman Tammy Duckworth agreed to cosponsor the bill in the House of Representatives.

Alec Frazier with Mat McCullough

The next day, I attended the meetings of the United States Access Board, the federal government body that regulates accessibility issues for people with disabilities. In the morning, they were having an in-depth meeting to report findings on accessibility of rail travel, especially Amtrak. In the afternoon, they were having their general meeting. In between, I met with their finance chair, Mat McCullough. When I was an intern for the American Association of People with Disabilities (AAPD), they assigned Mat to me as a mentor. They were extremely astute, as he continues to be a mentor today. When he is not serving on the Access Board, he is the Executive Director of the Washington, DC Council on Developmental Disabilities. After I am done with my master’s program in disability studies, I wish to move to Washington, DC to embark on my career as a disability rights advocate. Therefore, I asked Mat a number of questions about employment opportunities in the District of Columbia for people who wish to pursue my career path.

Alec Frazier with the original ADA

After the meetings of the Access Board, I headed over to the National Archives and Records Administration (NARA) to see the original ADA. In addition, I went to see the Articles of Confederation, Declaration of Independence, United States Constitution, and United States Bill of Rights. I also was able to see the Equal Rights Amendment (ERA). I continue to hope for its successful passage. The next morning, I went to the Smithsonian National Museum of American History (SI NMAH) Kenneth E. Behring Center to see the ADA exhibit. The exhibit included a replica of the original ADA, as well as the pen with which the original ADA was signed. While I was at the Kenneth E. Behring Center, I learned that Omar Sharif, Jr., a very prominent Muslim American actor and grandson of the iconic Omar Sharif, Sr., had become the first gay man in history to speak out about gay rights in the Arab world, on an Egyptian television show. I posted to my business Facebook page that this was a watershed moment in game rights in the Arab world, and it is. Posts to my businesses Facebook page automatically get sent from my twitter account. I then learned that NARA had retweeted a photo I had tweeted earlier of the original ADA, and that as a result, I had over a dozen new followers on twitter. Shortly afterwards, I learned that I will have full control over the disposition of charitable contributions generated by the profits of the film “Aiden’s Walk”, for which I am the disability consultant. Having this control humbles me. I vow to find proper recipients for these donations.

Alec Frazier with a replica of the original ADA, as well as the pen with which the original ADA was signed

I then went to the legislative debriefing and closing plenary session of the NCIL conference. At the closing plenary, it was mentioned that all centers for independent living had been encouraged to send as many youths, members of the ADA Generation, to the NCIL conference as possible. The said youth were then invited up on stage, and given the opportunity to speak to the crowd. When it came my turn, I used my decades of experience as a public speaker to help close out the conference. I got at least five rounds of applause, including the time when I announced that I had been tweeting the entire conference, including every single last speaker we had had. I also introduced my travel mascot, Millard the Buffalo, whom I had been taking pictures of around Washington, DC. He was in good company, as one of the other members of the youth contingent had been bringing a dragon around wherever he had been going. Many staff members and attendees of the conference asked to have their picture taken with Millard! When I sat back down in my chair, I learned that Omar Sharif, Jr. had favorited my tweet about him. At that point, my time in Washington, DC became too positive for me to handle, and my mind exploded!

Millard the Buffalo celebrating ADA 25 with a mojito!

I am in the process of putting hundreds of photos from my time in Washington, DC on to my Flickr page and my business Facebook page. Before I conclude this blog entry, I would also like to note that I took the train to Washington, DC from Buffalo’s Exchange Street Station, and I also went back to Buffalo the same way. I love the train so much! I would also like to recognize the Honorable Ambassador Steven Pifer, his extremely intelligent wife Marilyn, their charming daughter Christine, and their adorable cat Tina for being my hosts during my time in Washington, DC. I have so many wonderful friends, business contacts, and people who fill both of those roles! I am incredibly grateful for having been in Washington, DC during the historic 25th anniversary of the Americans with Disabilities Act! It was fun, informative, and a huge boon for my future career! Thanks to everyone who helped make it possible!

Alec Frazier is the Director of Autistic Reality. He does public speaking, peer advocacy, lobbying, photography, and sells his book, Without Fear: The First Autistic Superhero, which you can find at www.facebook.com/withoutfearautism.

Stephen Hawking once said, “Sometimes I wonder if I’m as famous for my wheelchair and disabilities as I am for my discoveries.” And it’s true that Hawking’s face is as recognizable as his science; as is Einstein’s, as is Ben Franklin’s. But would anyone know Einstein without his characteristically crazy hair, or Ben without his bald head and pocket watch? We’re quick to judge people by their appearances, even if their talents overshadow them. We’re quick to dismiss those we think can’t hold talent beneath their wheelchairs, behind their speech impediment or within their non-mainstream bodies, because they don’t fit our idea of what a scientist, an artist, a dancer looks like. That’s the society we live in. That’s wrong.

As a writer, a reporter and an editor, I’ve always wanted to be judged on my work, not my persona. As a woman with an invisible disability, I have had the infinite luxury of making that choice. When I was first diagnosed with fibromyalgia, I crouched behind “normal” like a shield, hiding my disease like a brand under a bandage. But it oozed and prickled, and as time went on, I decided the opportunity for advocacy was greater than the luxury of invisibility; because choosing to remain in the shadows can feel like an arrogant cowardice, when most of us don’t have that choice.

I’m not “normal,” but neither are you. Neither is anyone I know, and that’s what this event is all about. On Friday, March 6th, 2015, the Museum of disABILITY History will host an evening reading and panel of disabled writers or writers who cover disability; to read from their work and discuss the “Crip Lit” culture, what it means to them, and how it empowers writers of difference.

On Saturday, March 7th, 2015, we will open the mic to local and regional disability writers who want to share their own writing, their own stories and their own contribution to “Crip culture.” We’re inviting writers, poets, novelists, and academics who are willing to share a little piece of themselves to show that normal is no virtue, because normal doesn’t exist. Join me to talk about where we sit, where we stand, where we exist within our own society and the larger context. Let’s start a conversation; let’s contribute to the movement.

Are you interested in participating? Send an email to schumeea@gmail.com, with “Writing Application [your name]” in the subject line, explaining a bit about yourself, your writing background, and why you’d like to join the conversation. Please include 2-3 writing samples, so we can get an idea of your work.